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Patient perspectives of a diagnosis of myeloproliferative neoplasm in a case control study
Mary Frances McMullin1,2, Glen James3, Andrew S Duncombe4
1Centre for Cancer Research and Cell Biology, Queen's University Belfast, Belfast, Northern Ireland, UK.
Background:
Myeloproliferative neoplasms (MPNs) including the classic entities; polycythemia vera (PV), essential thrombocythemia (ET) and primary myelofibrosis are rare diseases with unknown aetiology. The MOSAICC study, is an exploratory case-control study in which information was collected through telephone questionnaires and medical records.
Methods:
As part of the study, 106 patients with MPN were asked about their perceived diagnosis and replies correlated with their haematologist's diagnosis. For the first time, a patient perspective on their MPN diagnosis and classification was obtained. Logistic regression analyses were utilised to evaluate the role of variables in whether or not a patient reported their diagnosis during interview with co-adjustment for these variables. Chi square tests were used to investigate the association between MPN subtype and patient reported categorisation of MPN.
Results:
Overall, 77.4 % of patients reported a diagnosis of MPN. Of those, 39.6 % recognised MPN as a 'blood condition', 23.6 % recognised MPN as a 'cancer' and 13.2 % acknowledged MPN as an 'other medical condition'. There was minimal overlap between the categories. Patients with PV were more likely than those with ET to report their disease as a 'blood condition'. ET patients were significantly more likely than PV patients not to report their condition at all. Patients from a single centre were more likely to report their diagnosis as MPN while age, educational status, and WHO re-classification had no effect.
Conclusions:
The discrepancy between concepts of MPN in patients could result from differing patient interest in their condition, varying information conveyed by treating hematologists, concealment due to denial or financial concerns. Explanations for the differences in patient perception of the nature of their disease, requires further, larger scale investigation.
Insights
Patient understanding of myeloproliferative neoplasms (MPNs) varies, with many not recognizing MPN as cancer. This highlights a gap in patient-physician communication regarding MPN diagnosis and classification.
Area of Science:
- Hematology
- Oncology
- Patient-reported outcomes
Background:
- Myeloproliferative neoplasms (MPNs), including polycythemia vera (PV) and essential thrombocythemia (ET), are rare diseases with unknown causes.
- The MOSAICC study is an exploratory case-control investigation collecting data via telephone questionnaires and medical records.
Purpose of the Study:
- To investigate patient perspectives on their myeloproliferative neoplasm (MPN) diagnosis and classification.
- To compare patient-reported MPN understanding with their hematologist's diagnosis.
Main Methods:
- 106 MPN patients were surveyed about their perceived diagnosis, with responses correlated to their hematologist's diagnosis.
- Logistic regression analyses evaluated variables influencing diagnosis reporting.
- Chi-square tests assessed associations between MPN subtype and patient-reported categorization.
Main Results:
- 77.4% of patients reported an MPN diagnosis; 39.6% recognized it as a 'blood condition,' 23.6% as 'cancer,' and 13.2% as 'other.'
- Patients with PV were more likely to report MPN as a 'blood condition' than ET patients.
- ET patients were more likely not to report their condition at all; single-center patients were more likely to report their diagnosis as MPN.
Conclusions:
- Discrepancies in MPN perception may stem from varied patient engagement, physician communication, denial, or financial concerns.
- Further large-scale research is needed to understand the reasons behind differing patient perceptions of their MPN nature.
